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Author: Merrick Egber (March 2018) If you’ve been an avid reader of our written work, you may be surprised to see this article’s title. For anybody who is unfamiliar with my previous life, when I wrote for our newsletter from 2015-2016, I had suggested, what I thought, would be an interesting marketing concept: Why don’t we interview those members of our staff who have a personal connection to autism, whether through relatives, friends, or otherwise, about that connection so that readers will not only get to know our staff members better, but will also know about the stakes that are in an organization dedicated to improving the lives of those with autism, including, perhaps the ones being spotlighted, and as a title for the series I sort of suggested “Spotlighter of the Month”. I was pleasantly surprised that my novice status within the organization didn’t affect the receptive feedback from the chief of the newsletter at the time, and the green light was lit for the series, which ran, I believe, six articles, with, perhaps, the most recognizable being a phone interview with Lisa and Joshua Deer about what autism meant for her, and any stories, or anecdotes from him, which was pretty successful.

What changed, eventually, was I transitioned from the newsletter to our official blog and with that I also dropped the “Spotlighter” concept due to the ability to really open up about my personal history, my interests and the overall history behind the diagnosis of autism, there wasn’t a real reason to revive it yet, but it was always there just in case I needed to use it. The good news is that I spoke to the good people managing the blog about writing a new “Spotlighter” article and they both agreed that it sounded like a good idea. And so to a whole new group of fans, friends, relatives and neighbors you’ll get to see our organization, in a way that feels relatable, personal, human, for the inaugural blog edition of “The Spotlighter of the Month”.

For our first spotlighter, I would like to present our director of development, Mrs. Pamela Minelli. Besides her role here, she also helps run an autism employment organization known as Foodies4Autism with her husband, Dick Busto, who runs the Autism Project of Palm Beach County, and, most importantly, was my first contact that would lead to my job here. Between the two of them, they have a son named Andrew who happens to have autism. Recently, I was able to catch the three of them to ask a series of pertinent questions to Pam, Dick, and Andrew:

First of all, can you describe the person you’re spotlighting in your own words?

Andrew Busto is a happy and handsome 20 year old young man. He loves to be outdoors, swimming and walking in the park. His favorite foods are turkey pot pie, waffles, and any kind of gluten free cookie. He has two yellow labs and enjoys surfing YouTube. He’s traveled on a boat from Florida to Maine and back, and has visited 5 countries, including Japan and Australia. He also has autism.

What is your relationship to Andrew?

Andrew is our only child.

What is it that makes you proud of him?

We’re most proud of how Andrew makes other people feel. Even though he doesn’t speak, people love to be with him and share smiles and hugs. He’s quite charming!

What was your prior understanding of autism and how has Andrew changed, or maintained, your views on it?

We didn’t really know much about autism before Andrew was born. Remember, when he was diagnosed in 2000, the numbers were something like 1 in 10,000 births. Now it’s 1 in 68. We really didn’t understand that autism is a lifelong disability – we really thought we get him some therapy and he’d be a typical child in a few months or years. Of course, we now know that the large majority of people with autism will need support throughout their lives.

What would you say is your sole purpose in working for an organization devoted to caring for people like Andrew?

We wouldn’t say we have a sole purpose – we really have three purposes. Our primary purpose is to help our son, but we also are happy that we are able to help other people with ASD. And a third purpose is to help the teachers, therapists and caregivers who work with Andrew and his friends. They are the real heroes in our book.

What is your favorite story about Andrew?

Andrew was 2 years old when he went to China with us. He was quite the celebrity as many people had never seen a Western baby before, with blond hair and blue eyes. Dick was climbing the Great Wall while Andrew and I waited at the entrance, and a Chinese woman asked our guide if she could take a photo with Andrew. I said sure, and the woman grabbed Andrew out of his stroller and starting running away with him! I thought he was being kidnapped! But she just wanted to take him over to her family so they could all be in the photo with him!

What do you think anyone should understand about autism?

We think that everyone should understand that people with autism are just like everyone else – they have strengths and weaknesses, good days and bad days. If you take the time to get to know someone with autism, he or she will change your life for the better – we guarantee it!

What are your favorite resources to use when researching and reading about autism and those who have it?

Well of course our favorite resource is the Els for Autism website www.elforautism.org! There are links on the site for additional resources as well.

Are there any myths about autism that you wish to address?

Sometimes we hear people refer to autism as a disease – it is not a disease. Autism spectrum disorder is a neurodevelopmental disorder that impairs an individual’s ability to communicate and interact with others. There is more than one type of autism caused by different genetic combinations and environmental factors. Individuals with autism have issues with communication, social interactions, and activities. However, that is who they are, not what they have – they are not sick.

What does the term “autism” mean to Andrew, himself?

That’s a very good question, Merrick. We really don’t know the answer, or whether or not Andrew knows he has autism. We do know that he doesn’t get upset or angry when people have said unkind things to him in the past, about the way he was behaving or the sounds he was making. To us, that’s a blessing.

Andrew’s Questions

How would you describe yourself? Your interests, goals?

I think I am a fun guy to be around. I really like to keep moving, but I can be a coach potato every once in a while. I love YouTube and like to search for videos I know, but in different languages to keep things interesting! I really like videos in Spanish, French, Hebrew and German. I love hanging out with my two dogs, Allie and Sophie. My parents are pretty cool but my favorite person in the world is my Nan. My goal is to live with some of my friends near The Els Center of Excellence, so I can still hang out with the cool people who work on the campus, after I graduate in 2 years. They are really awesome!

What do you think people should understand about autism?

I think they should understand that just because I don’t use words, doesn’t mean I can’t communicate and have a relationship with you. If we spoke different languages, we’d find a way to communicate with each other.

How has the condition impacted you?

Sometimes I have issues with my stomach and with sleeping because of my autism. I have trouble sitting still and want to move all the time. On the bright side, I don’t have to work out at the gym because I’m constantly in motion!

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